Resources
RAND Health is a research division within the RAND Corporation. For 60 years, RAND has been working to improve policy and decisionmaking through research and analysis. RAND Health continues that tradition, advancing understanding of health and health behaviors, and examining how the organization and financing of care affect costs, quality, and access. RAND Corporation holds the copyright to the KDQOL-36™.
The Council of Nephrology Social Workers (CNSW) is a professional membership council. CNSW's purpose is twofold: one, to assist patients and their families in dealing with the psychosocial stresses and lifestyle readjustments and facilitate a treatment program that will maximize rehabilitation potential; two, to support the federal regulations governing ESRD reimbursement in regard to standards for social work practice and in the definition of a qualified social worker.
The Arbor Research Collaborative for Health conducts major studies in epidemiology and public health. In particular, Arbor Research offers expertise in biostatistical analysis, clinical practice, management and integration of large data sets, economics, and public policy. Since 1997 they have engaged in health outcomes research on chronic disease and end-stage organ failure, including the international Dialysis Outcomes and Practice Patterns Study, the Scientific Registry of Transplant Recipient, and numerous studies for the U.S. Department of Health and Human Services. Arbor Research is a not-for-profit research organization based in Ann Arbor, Michigan.
The DOPPS is a prospective cohort study of hemodialysis practices based on the collection of observational longitudinal data for a random sample of patients from a representative and random sample of units in 12 countries (Australia, Belgium, Canada, France, Germany, Japan, Italy, New Zealand, Spain, Sweden, the United Kingdom, and the United States). Data collection for the study has been on-going since 1996 and has yielded detailed data on more than 38,000 patients in over 900 dialysis facilities.
DOPPS investigations focus on determining which dialysis practices are associated with the best patient outcomes, with the primary goal of improving patient longevity, quality of life, and other outcomes. With over 75 peer-reviewed publications in print or in press, the DOPPS continues to provide numerous important findings that are relevant for patients and practicing clinicians alike. The DOPPS is supported by research grants from Amgen and Kirin Pharma, without restrictions on publications.
KDQOL Working Group (UCLA). This group of expert consultants developed the long form of the KDQOL™ in 1994, with support from Amgen. They tested and validated the survey and subsequently worked on shorter versions, as well as translations. The group is headed by Dr. Ron Hays, PhD, Professor of Medicine in the UCLA Department of Medicine, and a Senior Scientist at RAND Corporation in Santa Monica, CA.